Pediatric Multiple Sclerosis Alliance

Making Connections

One of the most successful missions of the Pediatric Multiple Sclerosis Alliance has been to connect families with children with MS. Parents from across the world have found PMSA and, thus, been invited into a group of kindred families. As parents join the PMSA Facebook group, they begin talking with other parents and caregivers, and they come to realize they’re not alone in their quest for knowledge about pediatric MS. As the conversations continue and deepen, true friendships are developed. Genuine concern for helping each other, sharing experiences, providing advice, and just being sounding boards become the daily conversations on the PMSA Facebook page. It has become exciting when some families have even discovered that they live in the same town as, or nearby, other families. And these friendships and connections are further deepened when families get the opportunities to physically meet.﻿

One of the biggest surprises for PMSA was a story of a connection made when two mothers realized their families were related. Here is the story of Jamie and Sarah…

At three years old, Jamie’s daughter, Allison, became ill, and during a 19 day stay in the hospital, an MRI revealed lesions on her brain. Now, seven years later, Allison continues to battle symptoms that doctors have suggested could be MS. And, although her family lives in Tennessee, Allison sees doctors at both Children’s Hospital at Vanderbilt and Children’s of Alabama. As many parents do, Jamie began searching the internet for information about pediatric multiple sclerosis and found PMSA. She joined the Facebook group to meet other parents with children with MS and to learn more about the disease.

Around this same time, in Illinois, Sarah found the PMSA Facebook group in her own quest for answers about pediatric MS. Her 13 year old son, Sam, had been fighting unexplained symptoms since he was four years old. After years of doctor upon doctor being unable to diagnose his seemingly neurological issues, he was referred to the Pediatric MS clinic at Children’s Hospital in St. Louis to investigate the suspicion of MS.

Because both Jamie and Sarah took to the internet to find out more about pediatric MS, they found the Pediatric Multiple Sclerosis Alliance. But little did Jamie and Sarah know that when they joined the PMSA family, they would, also, be finding real blood family.

As is the norm on the PMSA Facebook page, when new members join they are greeted by the other members. These greetings turn into conversations as to why people join, what their children’s stories are, the medical journeys that families have been on, and, most often, the comments of relief about “finally finding people that understand”. Because PMSA has grown so much in recent years, it’s not uncommon for parents to realize that they are not only in the same state or country as someone else, but are, in fact in the same city. And it has become common for families to realize that they see the same pediatric MS doctors.

The site administrator noticed that Sarah and Jamie shared the same unique last name and pointed it out to the two women. Since they were both relatively new to PMSA’s page, they hadn’t realized the coincidence. But as the two began to post and message back and forth, their curiosity was peeked despite living in different states. And it was jokingly said that maybe their husbands were long lost cousins. So they questioned their husbands about their relatives, and, after some digging, they discovered this to be the case! Sam and Allison were cousins on their fathers’ sides of their families.

Both moms were shocked at the revelation - they had even more to talk about than just MS! But the discovery did prompt more thorough discussions about their kids’ health histories and experiences. Since that remarkable day, the moms have stayed in touch. Who knows? Maybe these cousins from Tennessee and Illinois will have the chance to meet one day!﻿﻿